One of the things that we think about as parents is, “where is my child going to be as an adult?” When you have a child with autism, these thoughts about our children’s future become greater: “What will happen to her when I’m gone?” “Will he be a burden on the community?” Sometimes, we worry about our child’s independence so much that we even avoid thinking about it because it is just too much. But what if we could set goals now that would put our children on a road towards independence; no matter their age? 

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Full Transcript

Kat Lee: So I was thinking today we would talk about the road to independence. You have been mentioning that on and off and other discussions, but we haven’t actually had a podcast about that. And it’s been really speaking to me that that needs to be a major theme … You know what I’m saying … of everyone who’s involved with work with the children. So you’ve got me really excited about that topic, the road to independence.

Dr. Sheely: I’m excited about it too. And honestly, I don’t know if we need a discussion about anything else ever. I mean I think about my own children. I know you have a couple of children and one of the things that we actually think about very early on, even though it gets translated into are they reading yet or things like that, where are they going to be as adults? Are they going to go to college or they’re not going to go to college? Are they going to do something different?

Dr. Sheely: So that is one of the themes that all parents think about. And I know parents think about it worldwide because I’ve had the opportunity to meet a lot of parents in Kenya a couple of months ago. And in talking to those parents, one of the things that kept coming up is what’s going to happen to him? What if I’m not here, is he going to have a job? Is he going to be able to take care of himself? Is he going to be a burden on the community?

Dr. Sheely: Some of the people came from more rural communities, somewhere from Nairobi. So this idea of independence is one that we sometimes skirt because we get caught up in the daily routine of the things that we’re teaching or the things that we’re doing, or I think we get caught up in avoiding it because we worry about it so much. We’re afraid to face it.

Kat Lee: I think those things you were talking about just kind of the daily things or maybe the way our eyes are being pointed keeps us from thinking about that. I mean when you use the phrase the road to independence, you’re talking about a journey. And I think parents need to reflect on, are you on that road? Are you on a road somewhere else? You know?

Dr. Sheely: Yeah. What’s the road you’re on, and are you mindful of the road you’re on? It’s a hard road. I don’t mean to minimize how hard it is. I would also say that it’s very satisfying. And once you began to see that that road is getting you closer to the goal that you’ve set for yourself, that goal of independence, whatever your child’s potential is for independence, then it has its own momentum.

Dr. Sheely: It doesn’t really matter if I say, “You’re doing great,” which I say a lot, but it doesn’t matter if I’m saying it or you’re saying it because the parent begins to feel it. The person with autism begins to feel it, and that’s enough of a motivation to get going. I think that our internal motivations are much stronger than the motivations that are external.

Kat Lee: I think sometimes when we talk about this kind of a topic, people think, well you’re talking about getting on that road when the children are young. But what I’m trying to tell people is it doesn’t matter when you get on the road, you’re on the road. So age is not as much a component. I don’t want people thinking, “Well, my child is older, so too late to get on the road,” too late to take the trip.

Dr. Sheely: Yeah. The poor man that I saw years ago who was 62, I keep talking about him. Anyway, he got on the road very late. He was 62. What we can overlook when people get on the road is that we’re not thinking about their age, but we are thinking about where they are developmentally. And some of the things we work with, with very young children are things we need to work with, with people no matter their age.

Dr. Sheely: He’s just had a lifetime of being confused. The truth is a two-year-old has had a lifetime of being confused, but if you’re 62 you’ve had more of a lifetime of being confused.

Kat Lee: Yes. I think that’s so important. I have worked with older, young adults, et cetera, and they are somehow stuttering through life without those early developmental steps. They have had other steps that kind of compensated, but the fact is without those, their road to independence is full of self-compensations, other people compensating for them, but not real independence for them and a lot of anxiety, which is not complete freedom, right?

Dr. Sheely: The anxiety, I think, has to do when we venture out from our zone of self-competence. Where do we feel competent and we know we need to venture out. But if we set that up early on, you don’t know how to do this but there’s a first step. And I’m going to help you start making those steps.

Dr. Sheely: The kids do really well and in fact, it’s one of the things that makes me proudest of the young people I see right now who have been in RDI for years and are now at a point where they are independent and how hard that is for them. I know I mentioned it last time, but I just have a couple more examples of people who got out of college and one who didn’t get out of college but looking for a job and they didn’t get the job. They didn’t get it.

Dr. Sheely: And nobody said to them, “Don’t worry about it. I’ll get the job for you.” They just didn’t get the job, and they kept going back over and over and over again. I think some of them went back 11, 12, 13 times to different places. To me, I want to tell you something, Katherine, that is a better sign of success and someone who graduates walks into a place and gets the first job that they apply for, or someone who finds that job for them.

Dr. Sheely: I want to see that resilience and we build up that resilience in the very young children and that young teenagers and the adults that we’re working with by giving them that sense, this is different, but I know what to do or this is different and I don’t know what to do, but I have the information I know to figure out what to do. And that leads to the independence, I believe.

Kat Lee: And I think back to how as a parent you have to get to there, you have to be on that road with your child because if you are overcompensating for them, and when I say that, I mean, no judgment at all. It’s being mindful of even little things along the way that you can pull back from and allow them to experience that independence that all people must experience to build that resilience to that ultimate conclusion.

Kat Lee: That can be very hard for children or parents really who have children with not just autism, but any disability that parents can be very fragile in this area to even remove themselves or even have habits that they’re comfortable with.

Dr. Sheely: It’s understandable, isn’t it? If you have a child that’s been difficult to comfort or a child who has not been a good apprentice to you, you figure out how to have a relationship with that child. And once you figured it out and the child is calmer, you don’t want to let that go because you’ve been walking on eggshells and now you’re really good at walking on eggshells. So you don’t want to break that egg. And it’s a very scary thing to do.

Dr. Sheely: The trauma that our parents and our children go through can be a very dramatic trauma. And it can slip back in at unexpected times. So you have a child who’s not particularly comfortable with change, but you also have the guides who are not that comfortable with change.

Dr. Sheely: By the way, I’m not just talking about teachers, I’m talking about myself as a consultant. Sometimes when I figured something out with the parent, I’m not sure I want to venture off into that tantrum again. And for teachers in a classroom where a classroom needs to be organized if the teacher’s going to teach, they don’t want to set that child off. And so they will stay with what works. And even if it’s an overcompensation, they will hesitate to pull it back.

Kat Lee: That’s really good. And I kind of think of it as management, which we understand again, either in the home or in the classroom can take precedence over moving toward that independence because of the busy-ness of the day, which is real. It’s not just a cliché. So mindful, it’s why I love RDI because it makes us as guides mindful of the need to not get in a management mode, which is very common in the home.

Kat Lee: I mean really, you’re managing since the day you have children, aren’t we? But to be in that mindful mindset, whether you’re a teacher or a parent or another guide, whoever you are. But I always tell people, don’t beat yourself up if staying mindful can be difficult when you’re talking about independence.

Dr. Sheely: Well, listen, staying mindful is hard for all of us. We have fast paced lives. We find ourselves stretched in so many directions and none of us is very good at multitasking. And in fact, everything you read about multitasking says it doesn’t exist. We just shift back and forth.

Dr. Sheely: Well, the more you find yourself shifting back and forth, the more difficult it is to focus on one thing and be mindful of it. But this area of compensation is one which I think is probably one of the largest hurdles when it comes to a person’s independence, no matter the age.

Kat Lee: Well, and there are, I know through our life with our children, there are habits and things you don’t mind doing for them, that you really almost need somebody else to point out to you like, “I don’t mind doing that.” Yeah, but that’s on the road to independence if they, yeah, you know they could do that for themselves.

Kat Lee: And by the way, this is where I say RDI is just good parenting, period-

Dr. Sheely: It is.

Kat Lee: … because if these happened to any parent, but why would you not transfer that responsibility? Well, have you ever heard a parent say sometimes it’s easier just to do it myself? I think that’s not uncommon amongst my friends with typically developing children to say. So, we get it, I guess is what we’re saying. But for children who are compromised, that can be really important even the little things.

Dr. Sheely: The little things and I just mentioned that we have a fast paced lifestyle, and the faster it gets, the more quickly we want to overcompensate it and just get out the door. This morning, I was trying to get my grandson out the door to go to his LEGO camp, and he’s learning to put on his shoes and socks. But I was in a hurry and I said, “I’ll do it, come here.” He said, “Mama, I’m learning to do it myself.”

Dr. Sheely: So we were later, but in that moment of trying to get out the door, I wanted to take it over. And we find ourselves doing that all the time. And when we have so many areas of independence, whether it’s putting on the shoes or getting your lunch ready or getting out the door or forgetting your homework or not forgetting your homework, some of those things are going to be compensated for by the person who’s trying to get the child out the door.

Dr. Sheely: Maybe not all of them, but every time you overcompensate in one area, now you’re overcompensating in that area. And it’s hard to get the routine together and the organization together so that the child feels good about themselves, feels competent about himself, and is on that road to independence, which is where we’re headed. I mean, we’re not headed out the door to the grocery store. We’re headed out the door toward independence. And sometimes I have to remind myself of that.

Kat Lee: It’s a continual process of self-evaluation, whether you’re a grandmother or a parent or a teacher. And one of the things I tell parents is some children, if you just let … Your example is great. If you just say, “Get on over here, I’ll put your shoes up.” They’ll be like, “Okay.” And they’ll be like, “Okay,” for their lives.

Kat Lee: And so you have to think about you don’t want that to be your habit. And that can be challenging. But it can be challenging too … I just kind of go back to, if you’re okay with it too, it’s very challenging. It’s difficult. I think, I love our example, the shoes because maybe for folks listening going, “So those little things lead to independence?” And our answer is yes because they add up.

Dr. Sheely: They do add up and the stakes are high.

Kat Lee: Yeah, they are. But I love to think about your grandson and the feeling of achievement he had to have by giving the time to do that. And so much about what we’ve talked about today and the road to independence also has to do with time, which is another beautiful thing about our RDI program which follows everything.

Dr. Sheely: And just like you, Katherine, I think it’s important that we don’t beat ourselves up, that we don’t let those times when we’ve been less than successful be the things that determine how we feel about ourselves. Negativity, whether it’s about ourselves or somebody else, carries a lot of weight.

Dr. Sheely: And I feel it’s important that while we’re bringing our memories to the forefront, that we concentrate on those memories where we’ve done it well, where our children have done it well, and that we use those as the memories that help us move forward.

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